Updates for May    Last updated 11:30 pm, Thursday, May 30th

May 3, Fri Tuesday this week Val's mom, Beatrice, left and the same day her sister Vanessa arrived. Before the operation Val had originally thought we could get along fine with just her, me, and my mother, Rita. It became quickly obvious that we couldn't have managed nearly as well without the help Bea gave, especially immediately after surgery when Val needed help to do anything at all. It was great having her here and we appreciate all her love and concern. The two moms got to spend a lot of time together also, something they haven't been able to do before.

Wednesday Vanessa drove Val to Missoula for another eye appointment with Dr Todd Murdoch. When he asked how the prism lenses had worked, he was surprised that Val hadn't needed them. He laughed when Val joked with him that he had scared her brain into correcting the double vision after her last with visit with him. He said that the hemorrhages had disappeared (He hadn't told her there were any before!) and the swelling (papilledema) was down. She told him that she was using the quality of her vision as in indicator of her CSF pressure; he said that in conference with Dr Von Doersten (they are next door to each other in the same medical center) they had agreed themselves to do just that. He was impressed and pleased with her progress and told her to keep doing what she's been doing.

She has been taking homeopathic Hamamelis Viginiana (Witch Hazel) which is indicated for swollen and bloody tissue. Vanessa, a wildlife rehabilitator, suggested it to her since that is what rehabilitators use for owls who are hit by cars. Their eyes are almost always badly damaged and heal twice as quickly using the H.Virginiana as standard veterinary drugs. She is also taking homeopathic Arnica Montana - indicated for trauma, bruises, and muscle soreness, and drinking herbal infusions of red clover and stinging nettle (The herbs were sent by Mary, Ian's mother.)

Thursday was an emotional day for Val and her positive attitude crumbled somewhat. She had woken from a dream in which she had a job in an office, but had no job description and nothing to do; she was supposed to stay and get paid, but was distressed to not be useful. For someone who has always been extremely active and involved, it is obviously very difficult for her to be cared for and be unable to function normally. She found that crying raises CSF pressure and made her head feel awful so it was a quiet day. She and Vanessa transplanted all the garden starts out of flats in the house under grow-lights into pots in the greenhouse.

Friday - Val felt well enough to run some errands with Vanessa, and her eyesight has improved enough so that she is able to read a little, perhaps for ten minutes at a time. Doing her exercises, she has upped her arm weights to five pounds. Her body weight is up to 100 pounds. She has noticed that her naps - 3 or 4 a day - are a little shorter, maybe 45 or 50 minutes instead of an hour or more, giving her more waking time. She is being quite good, however, about stopping and resting at the first sign of increasing visual problems, or a feeling of pressure. She took a walk around the property be herself today.

May 12 Mon Mothers' Day, and one month since Val left the hospital.
Vanessa left Tuesday morning the 7th in a snowstorm (5"), and we are currently between sisters. Val and her family agreed that they will fly her to North Carolina after the next round of doctor appointments, so Tina has delayed her arrival until the 22nd, and will escort Val back East on May  29th for a month's stay.

We think her brain stem may have shifted position a little this week; she woke up from a nap a few days ago with some tingling and numbness in her lips and cheek, and increased visual disturbances. It seems to be fading, and we expect it will go away again as it did before.

Monday Val went out to lunch with Rita and Vanessa and experienced sensory overload. It seems her brain has largely lost its filtering ability and she is (involuntarily) aware of everything. Walking into a busy restaurant she had to do an immediate about face and retreat to the sidewalk. Later during lunch, she found she had to close her eyes and plug her hearing ear to reduce sensory input in order to remain long enough to finish eating. She often neeeds to do the same thing in the car. She is practicing reestablishing that filtering capability by putting on music while she writes thank you notes for the cards we have received.

Wednesday, accompanied by Rita, Val did some shopping in a grocery store which she found much easier to take than a stop at K-Mart a little later.  She went to the shop for a haircut this week (only slightly painful when the hairdresser would pull a little hard. Friday evening she and I went to a talk on communication with animals (she's pretty good at it), and Saturday she attended the all-day workshop for it.  Much of the workshop was quiet and meditative, and she had made arrangements for a location to take naps, so she did quite well, finishing the day feeling only moderately uncomfortable. 

She did find out this morning while strying to open a stuck window that doing the Valsalva Maneuver (holding your breath and  exerting) causes not only a rise in intra-thoracic (abdominal) pressure, but an an immediate rise in ICP (intra-cranial pressure), to which her brain is still extremely sensitive. Her vision generally continues to improve slowly, and this morning she was able to see  -and make it through- reading the Sunday comics.  If she weighs herself right after a big meal she can hit 102 pounds.  Here is a photo of her this evening smelling some flowers from our yard.

Since Val cannot do much to keep herself occupied, and we have no house guests, she welcomes vistors and phone calls during her waking periods. The best times to call or stop by are from 8 to 10 in the morning, 3-5 in the afternoon and 7-10 in the evening.

Note: There has been a small change to the site -  follow this link for a note about that and some  thoughts on money, medicine, and emotions that do not really fit within the format of periodic  updates.
May 19 Sun Val has started doing a little gardening this week. [photo] She says it makes her feel more productive and is very theraputic. She has also been enjoyng the small herd of our neighbor's goats,  nannys and kids and a guard llama [photo], that iwe are grazing on our pasture (to avoid having to hay it this year).  She took her first watercolor "class" from a friend who is a local watercolor artist. Val's very inspired and is doing more painting as I write this Sunday evening. She can now read newspaper type (with reading glasses - as before) but her brain tires after ten minutes or so and she has to stop.

She has had several visitors this week who have helped her in the garden and the house, and have taken her to lunch.  She says it is great to get out and describes the visits as "Wonderful!".  With Rita one day this week, she did go to six stores in one and a half hours of errands.  She managed to survive the 'sensory overload' but had to take a very long nap afterward.

A friend will drive her to Missoula for an appointment with the eye doctor tomorrow, and Wednesday she and I will go up for appointments with both surgeons.  Her sister Tina arrives Thursday for a week's visit, and then Val will go back with her to Emerald Isle, North Carolina Wednesday the following week.

May 29 Wed This last week has been a busy one for Val. On Monday she went back to the eye doctor for a one-month follow up appointment.  Her progress was so good that Dr. Murdock felt there was no need for her to come back at all unless there was some relapse in vision or if Val wanted prescription glasses.  On her first visit to him four weeks ago, Val had double vision, with 20/70 sight, lots of inflammation and hemorrhaging around the fovea, and a "lazy" eye that wandered a lot. Two weeks later she had coordinated binocular 20/50vision, no hemorrhages and reduced inflammation. On Monday her vision was 20/30, the eye alignment was fine, she can use her normal reading glasses for now, and most of the tissue behind the eye was white, not red.

However, despite the rapid healing, there is till some swelling (papilledema) that needs to go down and Dr. Murdock said that would probably take another month or two to go away.  Val also still has some "bounce" to her eyeballs when she looks to the extreme left or right.  Her forward vision is a little fuzzy yet but until the swelling is completely gone she won’t know if she needs more than pharmacy glasses for reading or driving.   The doctor declared that Val had "fantastic" eyesight and was amazed at how fast she healed, so she shared with him her secret of using Hamamlis virginiana, the homeopathic remedy her sister Vanessa recommended. To his credit he took note of it to look into.


On Wednesday Val had her follow-up visits with the neurosurgeons.  First was Dr. von Doersten, the ear specialist. He was happy to see how well Val was doing and said that with her thick hair it was hard to even find where the incision was in her head.   There is still some tenderness and numbness there and he said it will take a few more months for that to subside.  He also checked the incision made on her upper hip where the surgeons extracted some fat to use as fill in the skull, and said it was healing beautifully.  Last week I (Joe) had to snip out of that cut an errant stitch which hadn’t dissolved and was causing pain and irritation.  However, it has healed over and the incision is now closed.

Val also mentioned an intermittent but annoying ticking sound in her good ear and wondered what it was and would it go away.  The tick has a regular beat, like dripping water, and Val complains it is equivalent to Chinese water torture when it happens.  Dr. von Doersten said it was not an uncommon condition after surgery and explained how the tiniest muscles in our bodies, the ones that attach to the little bones in our middle ears to damp their movement due to loud sounds, may spasm for some reason. When they do, they produce that ticking sound.  As a matter of fact, the movement in the ear drum caused by the spasm is enough to be measured and recorded, and has been used to determine ear problems in children too young to talk.  He said if the ticking does not go away, those tiny muscles can be surgically snipped if need be.

Another question Val had was about losing her balance when entering big stores (like a WalMart or grocery store). The doc said that his vertigo patients all have trouble in large stores because the brain is trying to reconcile the mixed signals coming from the ear(s) and the eyes. The ear says "You’re upright according to gravity." but the eyes aren’t registering a firm horizon that confirms that. Instead, there’s a mixed horizon of vertical and horizontal shelves, high ceilings, lots of lights and expansive flooring. Taken all together, they can throw one off balance - even without brain surgery! (Hmmm, I wonder if throwing someone "off balance" is an intentional design feature of those stores. If you lose your grounding are you more susceptible to sales messages?)


The second appointment of the day was with Dr. Chandler, the neurosurgeon.. He answered Val’s questions about brain fatigue, what raises inter-cranial pressure and how it all of it affects the eyes. Basically what she’s experiencing is all within the range of "normal" responses to brain surgery and he said it may be a year or more before she can say "I’m back."

Dr. Chandler then explained possible radiation options, depending on what the other second opinion doctors found.

  1. a single large dose of radiation which has a higher likelihood of significantly reducing the size of the remaining tumor. (a possible treatment and can be done here)
  2. multiple (fractionated) smaller doses over several days  which are safer for the surrounding brain tissues (currently the most likely option and has to be done elsewhere)

He was still waiting to hear from the the radiation specialist at Mayo Clinic for a recommended course of action, and of course another MRI will need to be done before any treatment is decided on. [Note: the next day his office called us to say the hospital had never sent the requested copies of Val’s X-rays to Mayo.]  There is no clinical information on the results (risks) of such radiation after ten or fifteen years because it has not been around that long.  Both doctors said Val was doing well enough that they didn’t need to see her again for a couple of months.


On the way out of Dr. Chandler’s office we ran into Pamela Meck, the research coordinator for a neuroscience foundation that studies tumors. She had visited Val in pre-op to ask if the foundation could have some of the extracted tumor for research (yes, they could have all they wanted) and to advise Val on possible post-op results of surgery. Val was deeply grateful for that talk because it let her know that she should be prepared for brain fatigue and the requirement for lots of naps, which she otherwise might not have known and may have pushed too hard and gotten headaches as a result. Val then asked Pam to warn other female patients that such surgery can also affect a woman’s hormonal cycle and cause erratic menstrual periods, something the (mostly male) doctors don’t always deal with.

In other news, her sister Tina arrived last Thursday and has been a whirlwind of activity all week. Much to Val’s delight, Tina completed an entire list of gardening jobs that needed doing and Val can now leave her garden without stressing over what needs to be done. The two sisters had a great time together and today Tina escorted Val to North Carolina where she will convalesce for a month. If anyone would like to reach her at Bea and Nick’s house, her parents, the number is  (252) 393-6863. Any e-mails for her can now be sent to though Val will only be checking them every few days or so and probably won’t be able to answer all of them for a while. However, family members can help read or answer them as needed. She may be dedicating more time to gaining weight (she’s up to 104 lbs. now) and doing watercolors, which she is already enjoying. 

May 30 Thu Val called yesterday and said she and Tina had a relatively uneventful trip to Raleigh-Durham.  This evening she called once more to report she was at her parents' house near Emerald Isle, and it was raining, hot and muggy.